If you have questions or wish to describe your symptoms and treatments, send us email by clicking below.
I have been taking generic Actifed for my allergies for about 30 years and it works well. I recently heard about antihistamines' possible affect on my RLS which I have had for 35 years. Since my RLS isn't always every night I hadn't seen a connection before.
I have had almost nightly problems in the last few weeks so I laid off my Actifed for three nights (taking it only in the morning) and I didn't have any RLS problems. The next night I was itching so badly that I couldn't sleep so I took some Benadryl and of course then couldn't sleep for half the night because of RLS.
What antihistamine do you suggest to control my sneezing and itching that won't make my RLS worse?
Medical Reply
It seems that the Prometrium that I take for hormone replacement therapy has exacerbated my RLS symptoms. When I was taking Activella, which has a different progesterone, I did not have this problem. However, because Activella worsened my migraines, I had to change to .025 estradiol patch and the Prometrium 100 mg daily. I'm discouraged as the new regimen was helping menopause symptoms.
Any word on Prometrium?
Sheila in Denver
Medical Reply
Hormones will sometimes affect RLS and both estrogen (estradiol) and progesterone (Prometrium) may cause problems in some patients (likely a minority of RLS sufferers). You may have to consider a different hormone or consider RLS therapy.A Reply from Sheila
Eliminating the Prometrium dramatically reduced the RLS. I still twitch a little before going to sleep, but I'm able to fall asleep in about 20 minutes and not awaken till morning. How deeply I'm sleeping is hard to guess. I'm usually a little tired since this menopause thing. I'm still taking a tiny bit of estradiol for other reasons and I'm reluctant to discontinue.
After consulting with family doctor, I am eliminating the Prometrium to see if that was the case. If I still have it, I'll eliminate the estradiol and see the effect. Then I'll consider RLS therapy.
Sheila
My last visit she decided on Elavil. Since I had not been prepared to discuss this drug with her I took the prescription. After doing some research on it I really DO NOT want to take this either. What is your opinion on Elavil? or any antidepressant?
Thanks,
Medical Reply
It is 3:50 a.m. and I am looking for relief of RLS, still, after 40+ years. No need to describe my symptoms but to say they are EXTREME and are affecting my quality of life. Suffice it to say that my creepy crawly feelings extend up from my legs to the trunk of my body and I feel as though I could explode! Unfortunately, I don't, which keeps me at that heightened state all night.
Seems even worse
when I eat even the tiniest bit of carbs. Sugar, potatoes, pasta, etc. send
me over the top. And it's the same for my 3 daughters. Have you found any
correlation between RLS and carbohydrates? And why does Ambien work some
nights and other nights the RLS keeps breaking through, robbing me of sleep
and sanity.
Carolyn C
Medical Reply
Last week I started using 1.0 mg once a day. Prior to the use of Mirapex I was unable to sleep more than an hour at a time and my life revolved around trying to get enough rest to function. The Mirapex has made it possible for me to enjoy a nearly normal life style. I can sleep six solid hours every night. I do have RLS during the day but normal activities mask the problem. I increase the dosage when the RLS becomes so severe during the day that no activities can not be performed because I have to jump around.
Thank you very much,.
Dale
Medical Reply
You have helped me so much in the past with my restless legs and now I need to ask for your help again. I've just learned from my sister that she has developed symptoms of restless legs. She is 61 and has never had this problem before. She recently began taking Atenolol at 25mg/day and Toprol-XL (Metoprolol) at 25 mg/day for high blood pressure and rapid pulse and at about the same time she began experiencing restless legs.
Could either or both of these drugs possibly cause the onset of restless leg symptoms?
Thanks very much,
Rita B.
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I have been dealing with Restless Legs Syndrome for approximately four years. I also have problems with depression, it runs in my family, but so far I can't find another relative that has RLS. It seemed to begin when I stopped taking Trazadone. I was taking Prozac and having problems sleeping and Trazadone helped me sleep.
Eventually, after being off anti-depressants for awhile I was put on Depakote for the RLS. Amazingly it helped the depression and the RLS. I thought I was home free. Little did I know. When the RLS came back I went to another neurologist who prescribed Mirapex. I thought I died and went to heaven. Sleep glorious sleep, for awhile.
Then the RLS crept back into my life. Next I've been taking a stab at Requip. Again good results at first and now even with the addition of Ultram I'm going bonkers day and night. I don't know if this is rebound or what. I never know when it will hit me. Some days I wake up at 5:00 am with wiggly legs, sometimes I'm awake for awhile at l:30 and then again at 4:00am. I've gone for a couple of weeks now never knowing when it will hit. I've been taking Ambien off and on for the last week. It makes me very groggy in the morning, I still wake up at 5:00 or earlier and then go back to sleep at 8:00 am for an hour or so on the days that I don't have early commitments.
When I try to catch up on my sleep in the afternoons I always get Wiggly. I've tried taking the Requip in the afternoon and at 10:00 pm (.50) at each time. I'm trying to head off the wiggles before they start. Lately it seems like the Requip is causing the wiggles, at least in the daytime. Is this possible? I have caught up on my sleep by using the Ambien when I am severely sleep deprived but on occasion my husband has to drive me places because I'm either drugged up or sleep deprived and don't feel safe on the road.
All the drugs I take say to be cautious about driving. How do I live my life? In addition the Ambien makes me REALLY CRANKY. I think it might cause depression if I kept taking it. So, what is next? And why am I so resistant to long term relief? No matter what I do I can't sleep in past 5:00 am. I go to bed at 11:00 pm.
One doctor I've been seeing for other reasons says there is a connection between sleep and the ability to lose weight. She is trying to help me get my Circadian Rhythms straightened out and I'm trying to lose weight because I'm pre-diabetic (high cholesterol, high triglycerides, over weight, hyperinsulemia, and glucose intolerant, blood pressure normal).
IS THERE HOPE? I'm determined to get healthy. There was a day, not so long ago, when I could sleep anytime of day or night that I desired, for as long as I wanted. Maybe I used up my quota of sleep for this lifetime. I'm 61 and hope to live for a good long time. My grandmother made it to 98. Can you help? Does anyone out there have a similar experience or any incite?
Sincerely,
Ellen S. (aka Queen Wiggles a lot)
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I have suffered from RLS for 6 years now. Beginning, with what seems the same for many, while pregnant. I have learned to live with it for myself, but my 5 1/2 year old boy acts like I feel when he is trying to settle down. He is constantly cracking his ankles, saying that they hurt, and that cracking them does not make them feel better. He is a kicker while sleeping, and I'm wondering if anyone has heard of children suffering from this as well?
Medical Reply
I was taking 2 Mirapex a night (.125 mg) for months for sleeping and the Vicodin during the day for RLS symptoms. I tried Mirapex daytime and it made me very dopey, so only took it at night. Anyway the sonata kept me awake all last night. I would like to have your opinion on sonata?
Thank
you,
Dorothy
Medical Reply
First, though, some background: I have been taking Ultram (50mg) at the rate of two tablets twice a day for my "Sinemet legs," an intolerable aching which I believe is a legacy left me by being overdosed on Sinemet for restless legs several years ago. The rebound and augmentation effects of Sinemet seem never to have left me even though I haven't taken the drug since then and since beginning Mirapex. (Mirapex has been WONDERFUL in controlling my restless legs.)
Ultram has been very effective in controlling my Sinemet legs. I have been taking a drug holiday from Ultram every two weeks, substituting Tylenol 3 for two days before resuming Ultram again. But I dread the days with Tylenol 3 because it is inadequate in controlling pain, plus it gives me a feeling of having been punched in the stomach. Now to my question.
I had surgery 5 days ago (hysterectomy) and was given Oxycodone/APAP 5/325mg (Perc EQ) to be taken every 4 to 6 hours as needed for pain relief. It has been very effective and I am still taking it for pain, but have not taken any Ultram during this time. Since Percocet has been so effective in relieving ALL my pain (including my Sinemet legs), would this be a good drug to take for holidays from Ultram, instead of Tylenol 3?
I might add that my neurologist thinks there is no need for a drug holiday from Ultram, but I live in fear of building up a tolerance to Ultram which has been so effective in controlling my Sinemet legs.
Rita B.
Medical Reply
I have had RLS for over 12 years, perhaps longer and I didn't realize what it was, sometimes it even moves to my arms. Like most I've tried everything (non-medical) to no avail. Recently I was having a sleeping problem because of my blood pressure medicine (gave me insomnia, all I needed !) and my doctor prescribed Ambien.
This medication allowed me to get a great nights sleep (6-7 hours) and I felt great the next day. After changing my blood pressure medicine to something that didn't effect my sleep I still had to contend with RLS, so I thought . what the heck . and continued to take Ambien when I had troubling sleeping due to the 'leg thing '. Lo-and-behold I still got a great nights sleep regardless of how bad my RLS was troubling me. This stuff knocks me out in about 30 minutes .
I don' t take it every night because of some dependency issues. However, if I were a diabetic I would be taking insulin every day so what the heck, as long as it works. I'm not suggesting that all of the RLS family start taking Ambien but it might be worth talking to your doctor about and trying. I haven't read all of the messages posted on this and other RLS boards, so if this is a topic already discussed please pardon me .
I'm just so excited about being able to get a good nights sleep that I want to share my personal experience. By the way, I'm taking one 10 mg tablet two to three times a week . the days that I'm not super tired when going to bed and know that good ol' RLS will be visiting. Not a cure but at least I'm getting some sleep.
Regards
Doc'
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Have there been any successful cases or cases in general of PLMD being treated through Chiropractic care. I am curious because of the neurological and nerve stimulus that occurs with PLMD patients. My husband is 37 years old and is currently being treated with Permax. It has been successful in helping him to sleep and avoid twitching etc. however, being a rather young man with a severe case of PLMD, I am concerned about the long term indications it may have on him to take this medication.
I am curious about Chiropractic treatment as a logical test because of the nerve and neurological connection.
Thank you in advance,
Trish
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After 6 months of being treated for insomnia (Trazadone...Ambien...etc...) I had a sleep test and was diagnosed with a mild case of RLS as well as PLMD...Have been on Mirapex (2 .125 just before bedtime as well as 30 mg temazapam). Initiating sleep has been my problem for months....the temazepam seems to be working but at times it does not, and then I toss and turn, or get up and read.
Is initiating sleep one of the symptoms of this disease? Would alternating with Ambien be an option? I am due to see my doctor at the end of September.
Medical Reply
There is no need to alternate temazepam and Ambien. It is probably better to just take occasional drug holidays with Ambien.
I have had this for over 10 years. Sinemet has been my savior, but daily augmentation and increased dizziness is getting almost intolerable. I tried Mirapex several months ago. I immediately noticed increased dizziness almost at the start. But I only needed one .125 cap a night to sleep through the night and no augmentation. I thought it was a miracle drug.
But after about 2 weeks I needed 2 caps a night. At the end of 3 weeks I had a spell weakness light headiness and dizzy. My heart beat was 36 per min. The next day another spell and heart beat was 45. After a short time of rest it went up to my normal of 68 to 70. My doctor took me off of Mirapex.
Now I am ready to try it again because of the augmentation with Sinemet. Has this happened to anyone else with Mirapex? Any recommendations?
Bill H.
Medical Reply
A Reply from Bill H.
Thanks for the quick response to my e-mail on 7/15 and suggestion to try Requip to replace Sinemet. I took one Requip .25 mg last night at 11 PM before going to bed. The RLS was bad and no results from Requip. I took one Aleve tab at 1:30 AM. At 2:15 AM I took a 2nd Requip. No relief. In fact, RLS is still bad this morning.
Should I have taken 3 last night , or taken them closer, or even take another this morning? My prescription calls for 3 per day, but the doctor got his info from the RLS foundation report that I gave him. I am just confused (and miserable) on how to take Requip for possible good results. Any help will be greatly appreciated.
Thanks again,.
Bill H.
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I have been diagnosed with Period Limb Movement Disorder. And was wondering if a bad back could lead to a false diagnosis or be a contributing cause of PLMD. Reason being, I certainly do not have restless legs or the creepy crawly feelings described on various websites.
However, my lower back does drive me nuts and causes me to toss and turn before I fall asleep and I can feel myself tossing and turning from about 5 AM on in a light stage of sleep and it discomfort in my back that causes it. Also for as long as I can remember since childhood staying in the same position to long whether it be laying down, standing still or sitting has a vast majority of the time created the same restless feeling in my back. Any thoughts or suggestions?
Thanks,
Brian
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I have suffered from Restless Leg Syndrome ever since I was a child. Unfortunately, I only recently identified the problem by browsing the Internet. I am 41 years old.
Upon reading the literature, I started to take iron pills (1-2 a day) and this has, for all practical purposes, alleviated the restless leg syndrome symptoms. The impact was immediate. Note that I complained to my doctor about the symptoms and my lack of energy so he ran some tests. My blood and urine tests came back as "normal". The moral of the story - there is very little downside in simply trying the iron supplements regardless of the test results.
Michael J. C.
Etobicoke, Ontario
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My sleep specialist (through nurse via phone) wants to increase the Mirapex to .25 before dinner and the current dose of .25 at hs. Since I didn't have RLS before taking the Mirapex, it seems counterintuitive that it is not enough of a dose - it seems like it is too much of a dose.
What do you think? Thanks,
Susan H.
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Aren't there any medications for RLS that don't cause insomnia? I've taken Neurontin but it doesn't help my severe RLS. Mirapex and Requip both cause insomnia. Can you help?
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One uses Irish Spring and the other says any kind. One says in the sheets and the other says under the pillow. Both agree they don't know why it works but they also agree that they have had nothing but positive feedback from the patients.
I went to bed at 1:00 a.m. this morning and slept only until 4:00 a.m. so the Sinemet CR is not working and I am having the RLS during the day, while boating, while driving, while reading and I never did before. What can I expect from Permax?
Medical Reply
It is likely that your RLS occurring earlier in the day is due to augmentation from taking Sinemet, which can occur even when getting of the drug. Part of the problem is that you are not matching the Sinemet dose (that you stopped suddenly) with a similar dose of Permax (which you can't do as you need to slowly increase Permax to avoid side effects).
About a year ago I also started having severe pain in the evenings and early AM, along with the usual twitching and uncontrolled leg movement. My wife says sometimes my arms would also twitch at night. When the pain started my doctor suggested a neurologist whom he knew had worked with RLS. He started me on what is called here (Israel) Dopicar. It's the same as US products containing 25 mg Carbidopa and 250 mg Levadopa.
My dosage was 1/2 tablet about 11:30 AM along with 1mg of clonazepam. The evening dose, taken 1 1/2 hours before going to sleep, was 1 full tablet of Dopicar and 2 mg of clonazepam. The big problem with this is that I was groggy in the morning and my speech started to slur and I was becoming forgetful. Further, my reaction time seemed to be slower and my children and grandchildren suggested to my wife that they felt it was dangerous for me to drive; and I've stopped.
I've started on a regime of gradually reducing the amount of clonazepam. I'm now down to half of what I was taking before, and I hope to go further. The grogginess has stopped; my speech is better, but I'm still holding off on driving.
My question has to do with the use of clonazepam and Dopicar together. I'm having a difficult time getting a good answer, and I can't find anything in articles or other peoples letters that says they have the same form of therapy. I do fall asleep quickly at night but am up after 4-5 hours and have to start walking.
Has anyone out there had similar experience or is there some MD who can suggest why these two medications should be taken together? I'd really appreciate hearing from anyone.
Bernie K.,
Tel Aviv, Israel
Medical Reply
This week three things happened.
Is there a connection between the first 2 to create the 3rd one??
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My RLS seems to have two forms. There is the regular RLS and then sometimes I cannot sit, sleep or concentrate because I feel like I have a pinched nerve. I have always figured it to be the really miserable part of RLS as it can set in for a relentless day or two (day & night).
Is this second form RLS or something else?
Medical Reply
The term "pinched nerve" is not a medical one, but rather a lay term. Some RLS patients have a neuropathy (inflammation of some nerves) which may result in pain in their limbs unlike the majority of RLS sufferers who only have the urge move and uncomfortable feeling (creepy crawly sensations). This is not due to a "pinched nerve" which is due to the pinching or pressure effect of a bulging vertebral disc pushing on a nerve.When I go off the antidepressants, etc. the dreams stop of become mild. Since I have started the Mirapex, I am beginning to have more dreams and they are becoming more intense. I am taking one .125 mcg. at night only and it has stopped the restless legs, but I don't enjoy the dreams or waking up feeling tired. It takes me longer to get my day going. Is there anything I can do about this. It seems I am trading one thing for another.
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I've increased the dosage gradually over the years but this is what has been working for a couple of years now. I've had no noticeable side effects yet except low blood pressure which hasn't been much of a problem, but I'm concerned about taking this medication and probably having to increase the dosage periodically for the rest of my life.
Yet, experience shows me that if I miss the medication even one day (or take it at the wrong time), I cannot sleep that night at all. Before I started taking the Bromocriptine I learned the hard way what sleep deprivation does, so I feel I have no choice.
Should I be worried about long term side effects?
Gordon G.
Medical Reply
I have very severe RLS. I'm 61 and have had this since I was a teenager. It only gets worse with time. I've taken Neurontin at night, which helped me sleep but did little for the RLS, left me dopey the next day, and caused weight gain. Requip seems to worsen my symptoms, especially paresthesia.
Mirapex causes bad insomnia. What can I do? I need sleep, don't want to be dopey in the day, and am tired of fighting weight gain from medications. I have daytime RLS, which becomes severe in the evenings, to the point that I CANNOT sit still at all. Any suggestions would be appreciated.
I haven't tried the opiates. I have already tried benzodiazepines. Which of the opiates would be your first choice?
Thanks,
Karen U.
Medical Reply
I often prefer to prescribe methadone, which despite its stigma, works extremely well for RLS and contains no other medications.
The pain that occurs with the RLS is well known but the explanation for it is not yet available. Only a minority of RLS sufferers have this problem. The weak knees may simply be a reaction to the RLS and pain symptoms.
But, after reading so many of your letters, I see that many are complaining of insomnia from Mirapex. Would this not be a good choice for me. I feel that my doctor will do as I ask. I am not ready to give up on the Permax just yet but would like to have an idea of where to go and what to do next in this game of trial and error.
Medical Reply
For the past 3 years he has been waking up in the morning so sore that he can barely walk, tie his shoes, or drive his vehicle because every muscle in his body is sore. He says it is as if he is working out in his sleep or lifting weights. He literally has to pick up his leg to put it in the truck sometimes.
I am concerned because I have not heard anyone with PLMD say that they wake up with sore or achy muscles.....is this normal? Also, he is only 23 and was about 20 when all of this started....isn't he kind of young for this?
Please get back to me soon about this we don't know what to really do.
Medical Reply
He may very well have PLMD. He will need a sleep study to prove it. Many PLMD patients complain about sore limbs in the morning. A large percentage of RLS and PLMD sufferers have the onset of their problems before becoming adults.
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I had RLS about 5 years ago for just a year or two of my life. The "fidgety legs" as I called them happened at a time when I was having a lot of anxiety and depression in my life. I sought treatment for my stress and anxiety including a year of heavy counseling, yoga, exercise, etc. As my anxiety decreased so did my restless legs. I cannot help but think the two were related, I KNOW they were. Because luckily as my mind and thoughts relaxed, so did my body-- and I did not have to resort to any drug treatment.
Now I sleep fine, however.....my partner now suffers from the same "fidgits". She is 34 and is recently out of of an alcoholic recovery center. She is only 5 months sober and is still trying very much to figure out how to cope with herself and life without drinking. As a result of not being able to rely on alcohol to help her relax, she has developed a lot of anxiety, and along with the anxiety has come these nightly fidgits.
It takes her a long time to get to sleep with her legs constantly rubbing, moving or lightly jerking. I get extremely irritable because now I can sleep but my sleep is being constantly interrupted. I guess I can only hope that as she copes more with her alcoholism her fidgits will calm down. And the other downer, when you're an addict you cant take most of the drugs available.
I cant help but think there's a connection between anxiety, depression, or some type of brain imbalance and these "fidgits".
Thanks for the great
information on the website.
K.
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I've sent this email twice but I don't think the first one "left the post office" so I apologize if you've received this already. Do you think it's possible for a meningioma of 2cm pressing into the right side of the cerebellum has anything to do with worsening of RLS symptoms? It's very close to the transverse sinus and is being removed on October 7th.
From my research, I've learned that the cerebellum as well as the spinal cord is involved in RLS and PLMD. What is your opinion on this?
Thanks, Medical Reply
We have not real proof that the cerebellum or spinal cord
is involved in RLS. There have been only a few patients with either spinal
cord or brain lesions that have been even remotely associated with RLS.
Sent: Tuesday, August 20, 2002 7:49 AM And then sometimes (almost always nowadays)
I'll
take 1-2 more Sinemet during the night. I am getting a rebound effect
with
Sinemet. The Sinemet seems to work a little faster that is why I reach
for
it more quickly. Can I up the dose of the Mirapex that I am taking? I
currently am taking .25 mg (2 at night). I also take 2 warm baths at
night.
I seem to be getting worse. I read the article from the women that said
she
starts taking her Mirapex during the day. Would that help me? I usually
can't fall asleep until 2:30-3:00 a.m. and then wake up after about 4
hours.
I think I'm also anxious now, or it could be the lack of sleep. Last
night I
tried an Ambien when all else failed. I also have tried taking magnesium,
calcium and zinc as supplements (pill form) and don't see a significant
difference. I do wonder about the aspartame drinks. I consume a lot
of diet sodas and diet ice tea, etc. I can't drink alcohol without having
a terrible night of sleep with RLS. Sex does do wonders for me, but my husband travels a lot and
then says "I'm just using him for sex!" Help!!! I am in a terrible way right
now. Thank you, Medical Reply
You are right in that a lot of your problem may be coming from
augmentation
and rebound from the Sinemet. The best thing to do is discuss with your
doctor about tapering off the drug. I often use Mirapex at much higher
doses (sometimes as high as 3 grams per day) if needed. The dose of Mirapex
should be slowly increased until the lowest dose that relieves the problem
is reached (which should be easier off the Sinemet). Do others report severe aching in regards to RLS? Medical Reply
Iron Therapy Question
Thanks again for the great site. My RLS seems to be
reduced by about 60% through "iron therapy". My iron
profile is fairly normal except for the red blood
count, which is right at the lower limit of normal
(around 4.00 mil/mm3). We have been following your
site's recommended dosage for about 1 week now: the
exception being that we are using a prolonged release
version of fumarate. Does this type of iron have the
same RLS efficacy as the recommended ferrous sulfate?
Regards and Thanks in advance, Medical Reply
The best way to monitor iron therapy (other than to treat until your RLS
symptoms are gone) is to monitor the serum ferritin level which should be
brought to greater than 45. All forms of oral iron therapy have their pros
and cons, but the most important factor is how well they are tolerated. Stomach upset and constipation are fairly common and can limit therapy
greatly. Most oral iron is very poorly absorbed (often less than 10-20% of the
dose) and is worsened by food. To get maximum iron into your body it is
best to take it at least one hour before meals and take Vitamin C (about 250-500
mg) just before. I slept through the night without any problems and it has continued to work
for me ever since. After trying expensive ineffective sleep aids, this is a
wonderfully cheaper solution. Give it a try. Thanks, I discovered
your website today with great interest. I have suffered from RLS for several
years, but it only started causing insomnia about 2 years ago. I lived in
Germany at the time, and my neurologist started me with the equivalent of
Sinemet, which worked well until symptom augmentation started. A year ago we
moved to South Carolina, and the neurologist here started me on Requip. I've
gone from an initial 0.5 mg. up to now 2.0 mg (4x 0.5 mg. spread throughout
the day, starting at lunch, so I can work at my desk in the afternoon). The
2.0 mg. has been enough for the last 8 months, but that seems to be changing.
I don't really want to go to 5 pills, but the neurologist says I can go up to
8 (4.0 mg. per day) if I need to. Medical Reply
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I've written in the past and have appreciated your advise. Thank you. I have
a new question. I've been taking Mirapex for several years now. I started at
a low dose, one .125 mg. per night with good results plus Neurontin and Xanax.
I eliminated the Neurontin as it didn't seem to be too effective, plus seemed
to make me confused. Eventually I've had to increase the
Mirapex to 2 of the
.25 mg pills, plus Xanax (.50 to 1 mg). The Mirapex is effective in
controlling my legs, but once I take it my evening is "shot," I'm lethargic,
etc. But to top it off, even though I'm lethargic I can't get a good
night's sleep. Then I'm up at night eating. Needless to say I've
gained weight. I was wondering if you had any suggestions. I teach 3rd grade and can deal with my
RLS during the day, as I'm active. But
at night I need to get a good night's sleep. Thank you, Medical Reply
I have had RLS for 10 years now
and it is getting worst. Ultram (Tramadol) works wonderfully for me but when
I have to take a "drug holiday", I have been unable to find anything that works
as well as Ultram. I have tried Mirapex. I hated it, it made me so depressed
I wanted to jump off a bridge also Neurontin which did nothing but deplete my
wallet , its very expensive. I'm thinking of asking my doctor if half a
Permax
for the week I'm off of Ultram with the added use of Valium. Valium sort of
helps but I know it is addictive. Please remember this is only for a week
until I can back to using Ultram. I only use any of the drugs at night and
put up with the RLS during the day. Also, have you heard of use SAMe? I have
heard by the grapevine that it really helps and I wonder the exact amount is
needed. Thanks so very much, Medical Reply
Vicodin would likely work very well for your Ultram drug
holiday. Any drug that you take for a few days or for a week (for your drug
holiday) has virtually no chance of causing addition. I have many patients
who alternate during the week with a few days (3-4) of Ultram then a few
days of Vicodin.
SAMe has no proven role in RLS and only an extremely
small minority of RLS sufferers have gotten any benefit from it.
The restless legs would come and go over the 10
year period some good nights, many bad nights. I had a prescription of
Vicodin for my neck pain that I used, taking one pill after not sleeping
much for a week or two, until they ran out. Not knowing what was wrong I
suffered until last summer when I read an article in my local newspaper
mentioning restless leg syndrome, went to their web site and spent the whole
day at my office reading about it. All of the symptoms matched my symptoms,
a then found a local doctor, last August, who prescribed Sinemet (carbidopa/levo
) 50/200.
I initially found relief and began sleeping through the
night, until middle of November when the medication stopped working. I
thought that maybe since my physical activity had declined, that it might be
causing the problem. I began walking and running on a treadmill for 30
minutes a night 4-5 days a week and the symptoms went away( still taking
Sinemet).
This summer my running has declined and the symptoms have
worsened again and the problem starts about 3 pm every afternoon then
lessens and comes back again when I try to sit and watch TV around 8pm. In
addition many nights after I take the Sinemet the symptoms worsen for the
next 2 hours.
Is the running related? Should I ask my doctor to change
the medication? I don't know what to do and I am getting desperate.
Monroe C. Medical Reply
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DISCLAIMER The information and advice on RLS given on this web
site is for educational purposes only. None of the advice, information or medical
treatments should be followed without the supervision of your medical provider. The
information presented on this site is not a substitute for your doctor, but should be used
to help you discuss your RLS problem with your doctor. Do not undertake RLS medication
treatment on your own! Please seek qualified professional medical care to help treat your
RLS symptoms. If you have questions or wish to describe your symptoms and treatments,
send us email by clicking below.
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Pat
Subject: RLS
I desperately need your help. I have been suffering with RLS for about 30
years now. I started getting it when in college and I am now 48. I have
tried almost every type of medication that is on your list. I currently
am
taking a Sinemet at around dinnertime (or else I can't sit down), and then
I
take 2 Mirapex at bedtime.
Gail
Several other RLS sufferers have noted that sexual relations help the
problem considerably.
Sent: Tuesday, August 20, 2002 7:24 PM
Subject: Pain and RLS
My neurologist has diagnosed me with RLS and many of my symptoms certainly
fit. Mirapex is helping. Rather than feeling restless, however, my main
complaint is severe pain in my feet and - not as often - in my calves. It is
always at night.
Marilyn H.
About 20-30% of RLS sufferers have a separate painful
neuropathy such as you are complaining about. This may sometimes be helped by
increasing the Mirapex dose, by adding Neurontin or by adding a pain killer
such as Ultram or a narcotic.
Sent: Wednesday, August 21, 2002 12:28 PM
Subject: Iron Therapy Question
Gini
Sent: Tuesday, August 27, 2002 8:19 AM
Subject: My instant relief!
I once read in one of the monthly RLS Foundation newsletters about a reader
who tried an herbal supplement called horse chestnut. I picked some up at my
local pharmacy and took one capsule before going to bed.
Melissa B., Greenbrier, TN
Sent: Wednesday, August 28, 2002 6:27 PM
Subject: Question
I'm wondering if Vitamin B therapy as a supplement therapy might help. I'm
trying to avoid just increasing the Requip. Still, I am grateful for this
medication (and so is my wife!!).
Herb B.
Lexington, SC
The odds of Vitamin B helping are miniscule. The average
RLS patient needs between 2 and 6 of the Requip .25 mg tablets. Patients with
more severe RLS can go much higher.
Sent: Wednesday, August 28, 2002 11:25 PM
Subject: RLS
I'm a 39 year old
female. I think I've had RLS since a child. I didn't really know
what it was called at the time, but I do remember my mother having to
message my calves all the time because I complained that my legs were aching
and it caused me to lose sleep. My RLS is worse than ever right now.
It's to the point where I don't want to go see a movie, or I dread my
bedtime because I just know what I have to face. I can't even sit in a
meeting at work. I'm going to the doctor next week to see if he can do
anything for me.
My RLS affects me in my calves, knees and
sometimes even in my elbows and up my arms. It's a very irritating
feeling. The need to move my legs all the time to get any relief is really
making me crazy. The only little relief I get is soaking in a hot bath for
about 10-15 minutes. Then I try to get to sleep as fast as I can. My family
says I even kick my legs around in my sleep. This wakes me up throughout
the night, and I have to get up and walk around to get relief from this
monster.
Can you suggest any kind of medication for this?
Cheryl P..
Most RLS patients with symptoms like yours can get
excellent relief with Requip or Mirapex. Speak to your doctor about starting
on one of these medications and you will likely be amazed at how well you will
feel.
Sent: Saturday, August 31, 2002 10:59 AM
Subject: Mirapex
Jan S.,
Highland, CA
You should think about weaning off of Xanax, as it can
become addictive and it is easy to develop tolerance to this drug. Ambien
would be a better choice (but is often more expensive and not covered by
insurance plans).
Some RLS sufferers do get sedation/confusion with Mirapex
even at your relatively low doses. Other options would be to change to
equivalent doses of Requip (.25 mg of Requip = .125 mg of Mirapex) and see if
this eliminates the problem. If not, then another alternative would be to add
a narcotic (such as Vicodin) or Ultram.
Sent: Sunday, September 01, 2002 9:48 AM
Subject: (no subject)
Pat M.
Sent: Tuesday, September 03, 2002 10:32 AM
Subject: exercise
I am 48 yrs old and have been suffering from
restless legs for the past 10 years. The problem began about same time that I
injured my neck, ruptured the c 6-7 disk and required surgery to fuse bone from my hip to replace the ruptured
disk.
You are getting augmentation and rebound which occurs with
Sinemet in most patients on this drug. This is why I do not use this drug and
instead prescribe Mirapex or Requip which do not have these problems.
Sent: Wednesday, September 04, 2002 6:53 AM
Subject: Ambien- zolpidem.
Just received a 90 day supply of
Ambien from my drug supplier and the information sheet has blown my mind.
It says not to take this medicine for more than 7-10 days - for
short term us only. Also said not to stop taking this drug suddenly because
you may have withdrawal and be uncomfortable. Also, zolpidem is habit
forming. Which is the generic name, Ambien or zolpidem?
Can you explain why a doctor would prescribe
Ambien to get me off of
Klonopin? Am I not exchanging one monster for another? Please help me.
Thanks,
Jan B.
All sleeping pills come with the warning that they should
not be used for over 7-10 days. Studies have shown that Ambien is quite safe
in studies for up to 35 days. The problems with long term use apply more to
the benzodiazepine type of sleeping pills (Klonopin, Valium, Halcion,
Restoril, etc.). Most sleep specialists believe that Ambien is quite safe
even when used for prolonged periods of time.
I have had many patients who have been on long term Ambien
without any problems. The warnings that you see on the Ambien product label
refer to sedatives in general, not Ambien in specific. If you read the
warnings carefully, you will see that they really apply to other drugs and
have rarely if ever been reported to occur with Ambien.
Ambien is a particularly good drug to use when tapering off
of Klonopin. I use this very, very often for this purpose. Ambien is the
trade name and the generic name is zolpidem.
Sent: Wednesday, September 04, 2002 9:01 PM
Subject: RLS & food
I have discovered a sure-fire cause of RLS for me...potatoes,
tomatoes, jicama...anything in the Nightshade family
(white potatoes, tomatoes, eggplant) or the Morning Glory family
(jicama and sweet potatoes and yams)
Omitting these from my diet--especially the evening meal--has brought near
100% relief.
It may sound strange, but if it works!
SC
Washington State
We have heard stranger treatments for RLS than yours.
Clearly different things work for different RLS sufferers.
Sent: Friday, September 06, 2002 4:37 AM
Subject: RLS & other neurological conditions
I have been disabled with severe Chronic Fatigue Syndrome (CFS) and
Orthostatic Intolerance for 16 years with numerous neurological symptoms.
Peripheral neuropathy and RLS have also been a problem most of my life,
increasing in the last few years. In addition to the typical RLS problems
(unbearable, grabbing, hard-to-describe feelings in my lower legs, and the
associated sleep problems) I also frequently have a burning sensation in the
bottom of my feet, again mostly the left foot. These problems have
increased in the past year.
My question is: has RLS been found to be associated with CFS
and autonomic disorders such as OI? I have been on 3600 mg/day Neurontin
for 5 years which has helped with numerous neurological symptoms of CFS, and
which relieves, but does not stop, the RLS. An extra Neurontin will help on
a particularly bad RLS night.
A feature of CFS is intolerance to many meds and I am no exception,
especially with anti-depressants & benzodiazepines. Are any meds other
than Neurontin found to be effective and well tolerated for CFS and RLS?
I have also taken 30mg Doxepin at bedtime for sleep for
years. Can that suddenly worsen the RLS? Has the Neurontin lost its
effectiveness for the RLS (it still helps tremendously with other
neurological symptoms)? Can Neurontin eventually contribute to RLS and
peripheral neuropathy problems?
Finally, can the fluctuating hormones of
pre-menopause increase RLS? I am 48 and showing symptoms of pre-menopause.
Thanks for the help on this confusing problem.
A.K.
Neurontin should not have any worsening effect on your RLS
or peripheral neuropathy and has likely not lost its effectiveness in
controlling your RLS. It is likely that your RLS has just gotten worse or
something that you are taking or doing has worsened the disease (it may be
very difficult to discern what may be worsening your RLS except by trial and
error).
A good choice for treating your RLS would be to add Mirapex
or Requip. Doxepin may worsen RLS, but some RLS sufferers may be helped or
not affected by this drug.
RLS is associated with Chronic Fatigue Syndrome in that if
sleep is disturbed (as it often is with RLS), this may be the cause of CFS
(which then often resolves with treatment of the RLS). There is no known
association of RLS and Orthostatic Intolerance.
Hormones (menopause or menstrual related) may affect RLS in
a small but significant percent of female RLS sufferers.